PAXTON — Less than a week after having a one-pound mass removed from her left cheek, Katie Renfroe was back home, recovering in a crib in the family’s living room.
Her family expected 4-year-old Katie to be hospitalized in Hollywood in South Florida for at least two weeks following the 10-hour procedure Thursday.
“I told you God takes care of us, he takes care of her,” said her mom, Angie Renfroe, as she stood next to Katie’s crib.
The little girl watched her mom and smiled when Angie swooped in to kiss the top of her head.
“That’s a beautiful smile, it is,” Angie said, swooping down again and again to Katie’s delight.
Katie was diagnosed with megalencephaly before she was born, and doctors warned her parents of the potential severity of her condition.
The rare disorder caused portions of her head and face to be unusually large. She had part of her brain removed as an infant to control seizures.
Now, a surgeon in Hollywood will perform a series of surgeries to try to restore some normalcy to the little girl’s life. The weight of her cheeks was so heavy she got tired holding up her head.
Stitches line the side of Katie’s face near her hairline, and her left cheek remains swollen from the surgery. She also has a little bruising around her eye.
But she is alert, smiling and doing all the things she did before the surgery.
Her dad, Danial, who has been by her side virtually every minute, said Katie seems to be in very little pain. On their first night home, he slept on the couch a few feet away.
“I’m surprised my own self how good she looks now,” he said. “She’s pretty strong.”
Family members disagree about how rare the surgeon said her condition was. Their recollections range from one in a million to one in 10 million.
“Most (doctors) don’t even see a child like her in their career,” Angie said. “We already knew she was rare and special.
“I think all kids are rare and special in their own way,” she added.
In the two weeks since the world first heard about Katie and her rare condition from a newspaper article, donations have poured in to help the rural family of 10. The family lives frugally on Katie's monthly disability check and asks for little outside help.
They used some of the donations to help pay for the long trip to South Florida, including putting gas in the van and feeding the other children, who range in age from 1 to 14.
They also plan to pay back Angie’s brother, who loaned them his credit card to fund their first trip to the surgeon.
They will use the rest of the money to help pay for future trips. Katie faces as many as seven more surgeries to downsize other facial features, including her right cheek, left ear and tongue. She could return to the hospital later this month for the second operation.
Angie and Danial said they are a bit overwhelmed by becoming so well-known overnight. They were interviewed for a TV segment, but never saw it. They marveled that a waitress in Hollywood asked after Katie during dinner.
“It’s kind of like we’re famous all the sudden but it will go just as quick,” Danial said. “We’re people that kind of stay to ourselves. We don’t get out and bug anybody.
“It’s neat,” he added of the attention. “It’s a good thing that people are finding out that even though Katie has a problem, she’s still a person.”
She is the real superstar of the family, and acts the part. Toys in her crib are dumped overboard for the pure pleasure of watching a family member pick them up.
Propped up, surrounded by soft toys, she waves, claps her hands and signs simple words to family members. When her daddy picks her up, she snuggles into his shoulder and then makes a special Katie version of the sign for I love you.
“Daddy, you love him,” said Angie, from the couch, where their youngest child napped on her lap. “I love him too.”
WANT TO HELP? An account has been set up at Regions Bank in the name of Angie Renfroe for the benefit of Katie Renfroe. Catholic Charities also is working with the family. For more information, call 850-737-0864.
Contact Daily News Assignment Editor Wendy Victora at 850-315-4478 or firstname.lastname@example.org. Follow her on Twitter @WendyVnwfdn.